What Do Disabled People Really Want?
This is a comment piece by our Engagement Officer, Bob Williams-Findlay. It represents his personal opinion, and is presented here for discussion. It does not necessarily represent official A4I policy. We actively welcome comments and discussion on the content of this article.
Part 1
The purpose of doing a series of blogs on the subject of ‘Integration, Inclusion or Transformation: What do disabled people really want?’ is to develop the initial comments I made in mid-November in a post on my Facebook page. When asking this question I am focused on addressing what disabled people might seek to achieve as an outcome of their ‘emancipation’ struggle. In 2018 it was reported that:
“Nearly half of disabled people feel excluded from society and day to day life, according to a new report by disability charity Scope.” (1)
While the survey was relatively small, the opinions expressed have been fairly standard over the last forty years. The last decade has been particularly harsh with Austerity cuts, a growing crisis within Adult Social Care, and the weakening of the Independent Living Movement. How then do disabled people see the task of changing their social situation; it is campaigning for integration, inclusion or transformation?
My original post arose as a result of an interesting discussion that took place in a members’ meeting of the campaign organisation, Act 4 Inclusion (A4I). (2) Out of respect to A4I and its members, I am not going to reveal the discussions that took place in their meeting beyond acknowledging that there was a diversity of opinion surrounding people’s interpretations of what integration and inclusion means. A discussion took place as a result of a presentation which sought to give further thought to a set of new concepts introduced into the organisation at its 2021 Annual General Meeting. It is not my intention in this series of blogs to discuss in detail all the concepts employed by A4I because I want to focus upon the central question. One of the reasons behind this decision is the fact that all the concepts employed in the A4I Vision can be contested both in terms of meaning and application.
In May 2021 the organisation previously known as Reclaim Social Care changed its name, but it also adopted a new vision and strategy. A4I is not a disabled people’s led organisation, but it is working in that direction by working in coproduction with non-disabled allies to campaign for the development of a new national service delivering community based services via an eco–social system that would work for all disabled people, of all ages, with all types of impairment, but also for everyone in society. (3)
By asking, ‘What do disabled people really want?’, we are forced to confront a major tension that exists within discussions associated with disabled people: who exactly are we talking about? Each blog will seek to address this question by exploring both theoretical and practical issues.
To ask, “what do disabled people really want?” carries forward with it a series of unspoken assumptions as it is not talking about individual needs or aspirations, but rather forging a collective conscious socio-political thought. Making a statement of this kind can be misinterpreted and lead to false claims such as:
“’Social Model’ seems like an attempt to impose a particular discipline, which again limits free speech, thought, choices. It reminds me of the Stalinist regime and of ‘Animal Farm’ by George Orwell.”
I have never advocated using the social interpretation of disability in a rigid, dogmatic or static fashion. It is a means by which we can explore the nature of capitalist society’s relations with distinct groups of people. Mike Oliver held a similar understanding within his Social Model of disability; it is not ‘fixed’ in time nor application. In my writing, I tend to frame the “subjects” within the Social Model methodology developed by Mike Oliver:
“For me disabled people are defined in terms of three criteria;
(i) they have an impairment;
(ii) they experience oppression as a consequence; and
(iii) they identify themselves as a disabled person.
Using the generic term [disabled people] does not mean that I do not recognise differences in experience within the group but that in exploring this we should start from the ways oppression differentially impacts on different groups of people rather than with differences in experience among individuals with different impairments.” (4)
Some people are uncomfortable with the criteria he offers, but I believe they have a different starting point to Mike and myself. People can be oppressed without knowing, understanding or accepting they are oppressed. What Mike’s three-fold criteria offers is a framing of people with impairments who politically self-identify as being ‘disabled’ through the imposition of social restrictions. The majority of older and Deaf people do not self-identify in this way for a variety of reasons and this, of course, has socio-political implications.
In addition, I share Paul Abberley’s assertion that the disabled people’s movement doesn’t adequately articulate what is meant by ‘social oppression’ in relation to institutionalised discrimination. Neither of us believe they are one and the same. In my writing I attempt to maintain the importance of recognising differences in experience within the social group who have the political identity of being “disabled people”. Just to be absolutely clear, my understanding of ‘differences in experience’ refers to social restrictions which create or maintain disabled people’s exclusion or marginalisation within mainstream social activities. This has implications when considering the difference between oppression and encountered discrimination. A key theme therefore through the series of blogs will be the issue of oppression and its interconnectedness with the question being asked.
Not everyone with an impairment is a disabled person because some people are not subjected to unequal and differential treatment due to the fact that the person’s impairment does not mark them out as different, or where the impairment is not a major factor in the person’s social relations. In dominant approaches towards ‘disability’, it is viewed as the negative impact of an impairment on an individual’s ability to fulfil tasks considered to be day-to-day activities unaided. Using a reductionist logic: “the less a person functions like ‘a normal person’ (sic), the more ‘disabled’ they can be judged to be’. Of course, it is true that within environments designed by and for people with fully functioning bodies, the environments will impose social restrictions on those who are unable to conform to the expected or accepted functioning required to complete certain tasks. The Union of the Physically Impaired Against Segregation (UPIAS) argued that this situation was neither natural nor inevitable; nor was it caused by the impairment itself, but rather how society responds to impairment reality. This is why they broke the causal link between impairment reality and social restriction.
Here then is the basis for the social interpretation of disability. It was constructed by physically impaired people who experienced either exclusion from or marginalisation within mainstream social activities – for example, living, working, socialising within local communities. The core of disability politics therefore is concerned with the struggle for emancipation of disabled people from social prisons. In simple terms disability politics’ original remit had a dual purpose: end segregation through deinstitutionalisation and striving to build ‘inclusive societies’. The concept of ‘inclusion’ had not been developed back in the 1970s and therefore ‘integration’ was used by the early activists to signify the aspiration of disabled people to be full participants within society.
Disablement, using the social approach, is the structures and processes within societies that create and maintain the social restrictions encountered by disabled people. Disablism, it follows, is the ideological and material outcomes arising from viewing ‘functional loss’ as an inferior social status. The majority of social policy as relating to disabled people is concerned with managing ‘abnormal bodies’. As a historical materialist, I argue that disability, that is encountered systematic social restriction, is historically specific. Prior to the capitalist mode of production, individuals who had impairments were viewed and treated according to their personal circumstances and social or faith based assumptions regarding the cause of impairment. There has always been disabled individuals who have negotiated mainstream capitalist society and for the majority of time remained ‘invisible’ or not viewed as a social problem.
Since the development of the social approach towards disability, other people who identify as being oppressed due to perceived appraisals of bodies/minds have either embraced or rejected it as a tool for exploring existing social relations. How these groups relate to the social approach towards disability can only be determined by their collective exploration of their situation. At no time did UPIAS argue the social approach towards disability was thought to cover all groups defined as ‘disabled’ by capitalist society; they suggested commonality and difference did exist in the experience of social oppression, but it was not for physically impaired people to address these on behalf of others. Oliver’s Social Model’s methodology does acknowledge, as we have seen, the need to explore specific forms of disablement and disablism.
In my blogs on ‘what do disabled people really want?’ I am seeking to address particular social situations – that is, the aspiration to fully participate in mainstream social activities. I totally agree with Finkelstein’s criticism of the view that the disabled people’s movement had ‘three big ideas’. Our opinion is that we can only talk about the Social Model, independent living and the value of civil and human rights in a meaningfully way if we see them as interconnected elements of the struggle to overthrow disabled people’s oppressive situation. In the USA, there are people who are suggesting a shift in language, moving from ‘independent’ towards ‘interdependent’ living. Whatever term we employ to refer to the processes involved in establishing the means of inclusive living, it is essential that we acknowledge that social support will be a fundamental necessity for many people due to either impairment reality and/or disabling barriers. As a consequence, this support will need to be situated within the context of the struggle to remove unnecessary social restrictions to full participation within society.
Challenging discriminatory practices against individuals aids our overall struggle, but this political activity is not the essence of disability politics or praxis. I am aware that disabled and non-disabled people will struggle to comprehend this statement, so let me develop my argument. As previously stated, the nature of society in terms of its structures, systems, values, dominant thinking and practices, create and maintain disablement. Under these conditions the relationship between the macro and micro levels of society and the differing environments involved in existing social relations impact upon disabled people’s ability to participate in society. In the United Kingdom, the notion of institutional discrimination against disabled people has been rejected by the major political parties. As a consequence, ‘disability discrimination’ is reduced to being seen as:
“….. when you are treated less well or put at a disadvantage for a reason that relates to your disability in one of the situations covered by the Equality Act.” (5)
This individualises the experience and defines ‘treated less well or put at a disadvantage’ within specific contexts, for example, policies, procedures and practice of employers and service providers. I would argue this narrow way of seeing ‘disability discrimination’ has hindered our ability to identify the structural forms of disabled people’s social oppression in depth because the focus has always been on assisting the individual disabled person to fit into the status quo.
Within the context of the unequal and differential treatment encountered by disabled people, the focus on assisting the individual disabled person to fit into the status quo has been the legitimising force behind maintaining institutional living for those deemed too ‘disabled’ to live within the community. Challenging this assumption and the historical treatment of older and disabled people underpins Act 4 Inclusion’s vision.
Introduction
The current crisis within Social Care cannot be resolved by increased resources or ending privatisation alone; the entire system is oppressive, not fit-for-purpose, and is in need of a complete transformation. Personal and social support has to be addressed within the context o addressing disabled people’s emancipation struggle. The seven or twelve pillars of Independent Living are not about empowering individual choice and control, although that would be an outcome, they relate to creating the means by which disabled people can fully participate within society. It is against this backdrop that the dialogue about the different meanings associated with integration and inclusion was begun within A4I.
I am an officer of A4I and played a significant role in producing its plans, however, in my blogs I will be expressing personal views that may not be shared by the organisation’s membership as a whole. We are not all at the same point in the journey towards understanding what needs doing, therefore I will, if and where appropriate, share my views with them in addition to giving access to the blogs. I am however conscious of Paulo Freire writing:
“Leaders who do not act dialogically, but insist on imposing their decisions, do not organize the people–they manipulate them. They do not liberate, nor are they liberated: they oppress.” Pedagogy of the Oppressed (6)
Dialogically means working through a dialogue; hence, ‘to take part in a conversation or discussion to resolve a problem.’ In this way, we attempt to reach some form of consensus in order to progress. A4I views engagement in coproduction as working via dialogue. This is why the two central officers are known as the Facilitator and the Engagement Officer. I am providing this information in order to place both the discussion I took part in, and the blogs, in context. It therefore follows that as part of the process of embedding the new vision and strategy into our ways of working (praxis), it is necessary to ensure the concepts we are using are understood and shared by our members. This does not mean everyone has to ‘agree’ with every dot or comma, but that the broad ideas and concepts used make sense to the members in ways that can then be articulated to wider audiences.
I am hoping my blogs on ‘integration, inclusion and transformation: what do people really want?’, will lead to further dialogue on what is understood by ‘independent living’ in Britain.
Concepts and meanings introduced into Act 4 Inclusion
My starting point is to explore the core concepts within A4I’s vision and strategy. What do they mean by: “developing an eco-social approach towards developing community-based services”? The first concept to address is ecological which can mean relating to or concerned with the relation of living organisms to one another and to their physical surroundings. It can also refer to that which is characterized by the interdependence of living organisms in an environment.
One of the issues A4I wishes to convey is the urgent need to acknowledge the interconnectedness between the climate, ecosystems, and society. (7) The other related concept employed is social. Social can be employed to mean:
- living or preferring to live in a community rather than alone
- denoting or relating to human society or any of its subdivisions
- of, relating to, or characteristic of the experience, behaviour, and interaction of persons forming groups
- relating to or having the purpose of promoting companionship, communal activities, etc.
Within A4I’s vision, all of these meanings are brought into play. Two crucial influences on A4I’s dialogue have been the field of social ecology and what is understood to be the Social Model of disability. The field of social ecology examines society holistically, attempting to understand exactly how society’s collective environmental problems stem from social problems, social interaction, and interaction with the environment. Social ecology pays attention to the social, institutional, and cultural contexts of people-environment relations.
This perspective considers for example, the physical environment, social and cultural environments, personal attributes as a basis for addressing the interactions between individuals, groups, and organisations. By providing context we can gain a greater understanding of the complexity of human situations. Social ecology also incorporates concepts such as interdependence. It seeks to understand how we are dependent on nature for our existence, but also how humans have negative impacts on it. Physical environments include the natural world as well as the built world. The goal of social ecology is to create an ecology of freedom that promotes sustainability for both humans and nature.
What many disabled scholar activists argue however is that disabled people’s social interactions are impacted upon by disablement. Since the 1970s this situation has been explored by both the social interpretation and the Social Model of disability. (8) In general terms the Social Model definition of disability is spoken of as: ‘the loss or limitation of opportunities to take part in the community on an equal level with others because of physical and social barriers’. There is however a tendency to view these social barriers as a result of environmental, organisational, and attitudinal factors without always addressing their specificity or conversely, their interconnectedness. This has resulted in descriptive rather than an analytical usage of social models. I speak of ‘social models’ because I share the view that there is a range of models with differing socio-political sought outcomes attached to them. (9)
Historically, the disabled people’s movement has broadly argued the ‘cure’ to the problem of disability lies in the restructuring of society. Unlike medically based ‘cures’, which focus on the individual and their impairment, the restructuring of society is viewed as an achievable goal and to the benefit of everyone. This approach, referred to as the ‘social model’, suggests disabled people’s individual and collective disadvantage is due to complex forms of institutional and interpersonal discrimination. As I will argue in another blog in the series, the aspiration to change disabled people’s social status through ending their oppression, needs situating within the context of whether this is achievable under Capitalism.
There are already in existence eco-social models of disability that draw upon the bio-psycho-social approach from the World Health Organisation’s International Classification of Functioning, but this does not prevent disabled scholar activists from developing a radical version based upon the ideas put forward by the Union of the Physically Impaired Against Segregation (UPIAS). (10)
As part of the A4I presentation it was suggested that key to developing the new vision and strategy would be the ability to explain and put into action what lies behind the organisation’s new name: Act 4 Inclusion. The immediate task therefore had to be seeking agreement on how we view ‘inclusion’ and then looking at how our understanding of inclusion relates to the vision and strategy. When talking about either inclusion or integration, I have left out the word ‘social’ which should really proceed it, but that decision was taken for practical reasons. There is a danger of overusing the word ‘social’ within dialogues associated with disability politics.
One definition of inclusion is:
“…. how diversity is …. [used as a lever] to create a fair, equitable, healthy, and high-performing organisation or community where all individuals are respected, feel engaged and motivated, and their contributions toward meeting organisational and societal goals are valued.” This definition comes from Global Diversity and Inclusion Benchmarks: Standards for Organisations Around the World (11)
The argument I forwarded in the presentation was that developing inclusion is not the same as integration. Social integration broadly refers to in the majority of cases to a situation where minority groups come together or are incorporated into mainstream society. I hold the view that within a historical materialist social approach towards disability, it is asserted that it is not possible to ‘integrate’ people into a service, system or society that does not cater for their needs, lifestyles or place a positive value on their lives. It is therefore only by transforming the structures, systems, services, through acting for inclusion, will everything become fairer, more equitable, healthy, and able to perform at a high level. Using this argument, I will promote the view that acting for inclusion has to go beyond developing inclusive practices ‘to fit in with existing social norms’ in order to be truly effective. Arising from the definition of inclusion I have quoted, there is a need to ask to what extent can we realistically speak about ‘societal goals’ unless disabled people are involved in setting them?
Broadly, within the United Kingdom’s Independent Living Movement (UKILM), there was recognition that disability is a form of discrimination which is institutionalised throughout society and impacts upon disabled people collectively as well as individually. Historically, the experience of social restrictions resulted in exclusion and marginalisation in the form of institutionalised living for many who have significant impairments. It was asserted that:
To include disabled people within society required us to address the need for deinstitutionalisation.
To create independent living, it is necessary to identify disabling barriers or other social restrictions and prioritise actions for their removal.
Other disabled activists, while agreeing with the general thrust of the argument, raised concerns on two levels. Firstly, they saw the UKILM as developing differently to their US counterparts, and secondly, they placed a greater emphasis on the need for interdependency between people. They saw interacting with other people as being crucial if we are going to build an integrated and sustainable future. These activists believed talking about independent living was problematic and they spoke of Integrated Living. These differences within the broader disabled people’s movement remain important to understand and, I personally believe, they have huge implications for disability politics. I intend exploring how Ken Davis and Vic Finkelstein offered a perspective that is very different to the main one found within the UKILM from the 1990s onwards. It should be noted that these differences however were not discussed as part of the A4I discussion and currently the term ‘independent living’ is employed by the organisation.
What was said as a part of the presentation was that developing inclusive policies, practices, and services requires us to start from the ways in which social restrictions and disabling barriers impact according to circumstances or by taking account of relevant factors affecting different groups of people with impairments. This approach is preferred to simply seeking to address how individuals experience disabling barriers because they have specific impairments. Through identifying existing and potential social restrictions and disabling barriers encountered by older and disabled people we can be better placed to address an individual’s support needs. Building a holistic picture of someone’s lifestyle requires us to consider influences or environments affecting them.
What also needs taking account of is the fact individual influences shape people’s lifestyles, for example, how they view themselves; the knowledge, attitudes, values, and skills, they have. What needs adding to this is consideration of how a person currently live their lives, which includes their personal behaviour. It is not just about removing disabling barriers; developing independent living rests upon understanding an individual’s interpersonal relationships and those they have direct contact with. What this means is taking into consideration a person’s formal and/or informal networks, alongside existing social support systems which may be provided by family members, friends, neighbours, work or members of a club, etc.
A person’s lifestyle and support needs can be impacted upon by organisational or institutional influences arising from interactions with social institutions, for example: day services, workplaces, clubs, political bodies, etc., and their organisational characteristics. Given this, consideration of community influences is required. What kind of relationships does the person currently have with or in organisations with defined boundaries, for example, social and health services? Other community influences could include transport systems, housing, access to local amenities and community-based services. The ability to develop independent living and community-based services is also affected by societal and public policy existing at local or national levels, for example legislation or social policy.
Again, with hindsight, I realise this perspective on independent living may not be a shared one within the UKILM. My thinking has been influenced by the radical social interpretation of disability, but it should be acknowledged that many in the UKILM are sympathetic to the positions held by the USILM which promote ‘individual rights’. (12) These differences have not been aired in recent years and this could be one of the sticking points regarding the UKILM’s ability to move forward.
What does makes A4I’s vision stand out from many other perspectives is the acceptance that there are ecological influences that need to be taken account of. Global warming, climate change and the increasing need to develop sustainable communities all impact upon how we create inclusive societies and ensure older and disabled people are not faced with new restrictions or exclusionary practices. A4I’s vision works from the belief that an eco-social approach can build upon the past experiences of disabled people who employed social model approaches by paying greater attention to the interactions taking place between differing environments where social restrictions and disabling barriers are encountered. As a whole system approach, it encourages inclusive practice and the employment of coproduction. To act for inclusion therefore opens the pathway to the realisation of the demand, “Nothing About Us, Without Us.”
Why is this dialogue important?
When Sandra Daniels, A4I Facilitator, and I discussed the presentation, it was agreed that we wanted to include an exercise that would situate Independent Living within the context of developing community-based services. We share the view that it is necessary to ensure that it is understood that Independent Living is more than gaining personal living support or Direct Payments as it should involve putting in place the ability to have choice and control over all aspects of individual and collective lifestyles. Within current provision too often the question of socialising and participating in communities is neglected.
Given this desire to ground Independent Living in this way, we wanted to employ an exercise which would have two functions: firstly, to anchor an understanding of the difference between ‘inclusion’ and ‘integration’; then, secondly, to enable members to consider what might Independent Living look like for an individual who had a particular lifestyle. The aim was to tease out issues around inclusion, integration and independent living, but also with reference to developing an eco-social approach towards service delivery. Our intention was to focus on understanding the difference between ‘inclusion’ and ‘integration’ in relation to developing an eco-social approach towards service delivery and developing an inclusive society. What unfolded, I believe, raised more questions than it did answers; however, it needs acknowledging that this does not make it a negative outcome by any means.
What did we learn from the exercise? Firstly, it reinforces the view that dialogue is extremely important when seeking to forward a policy or practice. Secondly, the outcome of the exercise demonstrated the dangers of making assumptions about what knowledges already exist and the fact people’s interpretation of meanings can vary so greatly. What I thought would be a straightforward exercise proved, in the final analysis, to be extremely complex.
We also learnt from the exercise the need to reflect upon the consequences which may lie behind the differences that exist. My own reflections have paved the way for the context of my Facebook post and blogs. What I witnessed was how ‘inclusion’ and ‘integration’ could be and often is interpreted very differently by both disabled and non-disabled people. The different views as to what ‘inclusion’ and ‘integration’ were, cut across both groups, therefore there was not two distinct opposing camps made up of disabled people in one camp and non-disabled people in the other. What the meeting also taught me was that differing ‘interpretations’ not only do exist, but these are underscored by the socio-political perceptions people had.
For many non-disabled people, the difference or relationship between ‘inclusion’ and ‘integration’ is contextualised in terms of addressing inequalities and social development across many different groups of people as I will demonstrate later. For lots of disabled people, on the other hand, I believe the understanding of the difference between ‘inclusion’ and ‘integration’ primarily centres upon how they perceive the nature of both disability and society. To be honest, I understood that many used the terms in an exchangeable fashion, however, I thought since the 1990s disabled people familiar with Independent Living and disability politics had made a clear distinction between the two. In other words, I believed disabled activists’ attitude toward the word ‘integration’ had changed over time. (13)
To try and make sense of the lessons learnt, I want to unpack what I see as underpinning the different socio-political perceptions that exist. I have already shared the definition of inclusion used in the meeting however, I want to drill down further into what is viewed as ‘integration’ and eventually link it to how disabled people view the nature of both disability and society. In my opinion one of the reasons the terms have been employed in an exchangeable fashion is because they can be seen as having a common aim.
Within mainstream discourses around ‘inclusion’ and ‘integration’ there has been a tendency to focus on educational systems specifically, or social development generally, but for disabled people the debates have a specific application. Whether the debate be about education or wider society, I would argue that while both approaches aim to bring disabled people into ‘the mainstream’, one system expects them to adapt to the pre-existing structures and ways of doing, while the other seeks to ensure the existing structures or systems will adapt or change in order to accommodate the needs and interests of given disabled people or other diverse groups of people.
Mainstream discourses around ‘inclusion’ and ‘integration’
What I would like to do in this section of my blog is explore how ‘inclusion’ and ‘integration’ have been employed in a context beyond being connected solely with either disabled people or education. These concepts are used in relation to social development. In a draft paper for the United Nations’ Department of Economic and Social Affairs it was stated:
“The World Summit for Social Development, held in March 1995, established the concept of social integration to create an inclusive society, “a society for all”, as one of the key goals of social development.” (14)
It might be useful for any dialogue around the concepts under discussion to consider the concepts and meanings applied in the paper, Vision for an Inclusive Society. (15) A number of the paper’s concepts/definitions are worth consideration. Here are the main ones:
Social Integration
Social integration is understood as a dynamic and principled process of promoting the values, relations and institutions that enable all people to participate in social, economic, cultural and political life on the basis of equality of rights, equity and dignity. It is the process in which societies engage in order to foster societies that are stable, safe and just – societies that are based on the promotion and protection of all human rights, as well as respect for and value of dignity of each individual, diversity, pluralism, tolerance, non-discrimination, non-violence, equality of opportunity, solidarity, security, and participation of all people, including disadvantaged and vulnerable groups and persons.
Social Inclusion
Social inclusion is understood as a process by which efforts are made to ensure equal opportunities for all, regardless of their background, so that they can achieve their full potential in life. It is a multi-dimensional process aimed at creating conditions which enable full and active participation of every member of the society in all aspects of life, including civic, social, economic, and political activities, as well as participation in decision-making processes.
Before making any observations on these two definitions, let us acknowledge what the United Nations views as social exclusion.
Social exclusion
Social exclusion is a process through which individuals or groups are wholly or partially excluded from fully participating in all aspects of life of the society, in which they live, on the grounds of their social identities, such as age, gender, race, ethnicity, culture or language, and/or physical, economic, social disadvantages. Social exclusion may mean the lack of voice, lack of recognition, or lack of capacity for active participation. It may also mean exclusion from decent work, assets, land, opportunities, access to social services and/or political representation.
In this paper, the United Nations are speaking about ALL people from across the globe. It is not my intention to address the UN’s ‘agenda’; my interest is purely focused on the mainstream concepts/definitions and to what degree they aid or hinder our understanding of the meanings attached to integration and inclusion. My starting point therefore is to question the usefulness of these concepts/definitions; and to determine to what degree they provide clarity, or simply reinforce muddled dominant thinking? How are they applied?
Unfortunately, I am not able in this blog to critique this paper due to a lack of time and space, therefore I will limit myself to presenting key facts that shine light on the debates past and present. By considering the first six commitments made at the World Summit for Social Development via its 1995 Declaration, it is possible to see how the UN approach social integration and social inclusion. They stated:
1. Commitment to creating an economic, political, social, cultural and legal environment that will enable people to achieve social development.
2. Commitment to the goal of eradicating poverty in the world, through decisive national actions and international cooperation, as an ethical, social, political and economic imperative of humankind.
3. Commitment to promoting the goal of full employment as a basic priority of our economic and social policies, and to enabling all men and women to attain secure and sustainable livelihoods through freely chosen productive employment and work.
4. Commitment to promoting social integration by fostering societies that are stable, safe and just and that are based on the promotion and protection of all human rights, as well as on non-discrimination, tolerance, respect for diversity, equality of opportunity, solidarity, security, and participation of all people, including disadvantaged and vulnerable groups and persons.
5. Commitment to promoting full respect for human dignity and to achieving equality and equity between women and men, and to recognizing and enhancing the participation and leadership roles of women in political, civil, economic, social and cultural life and in development.
6. Commitment to promoting and attaining the goals of universal and equitable access to quality education, the highest attainable standard of physical and mental health, and the access of all to primary health care, making particular efforts to rectify inequalities relating to social conditions and without distinction as to race, national origin, gender, age or disability; respecting and promoting our common and particular cultures; striving to strengthen the role of culture in development; preserving the essential bases of people-centred sustainable development; and contributing to the full development of human resources and to social development. The purpose of these activities is to eradicate poverty, promote full and productive employment and foster social integration. (16)
On paper, it is doubtful anyone supportive of radical agendas would object fundamentally to any of the six ‘commitments’ however, twenty-six years on they do appear to have a hollow ring to them because very little has developed along these lines. At the heart of the matter is this expressed view:
“What is most significant in creating an inclusive society is the engagement of the individual in the process by which society is managed, ordered and represented.”
Across the globe, including the UK, we are seeing less not more participatory democracy as well as the denial of human and civil rights. In terms of disabled people’s struggle for emancipation and the debate around transforming existing systems, I want to avoid being totally dismissive or pessimistic regarding the way forward. I see a political necessity to retain the traditional language of talking about disabled people’s struggle for emancipation because I believe it is the right way to speak about their historical situation. To be emancipated means free from legal, social, or political restrictions; liberated. Within this context, the draft paper is difficult to accept because of the things it fails to acknowledge, such as the nature of capitalism or colonialism, but it does give us nevertheless much food for thought. It is worth reading if you can make time.
What I want to highlight from the paper is the following section where a clear distinction is made. The paper says:
“It is important to understand that social integration is not an end-state
that societies can achieve, but a dynamic process in which societies engage in order to further human development. The concept of social inclusion is similar to that of social integration. However, social inclusion, focusing on creating conditions for equal opportunities and equal access for all, is considered to be useful when describing the actual process involved in promoting social integration.” (15)
What I see this as saying is that ‘social integration’ is:
“…. the process of creating unity, inclusion and participation at all levels of society within the diversity of personal attributes so that every person is free to be the person she wants to be. Personal attributes include socio-economic class, age, gender – sexual preference and expression, political ideas, ethnicity and cultural traits, religion, citizenship (national origin) and geographical region of origin and so on. Social integration enables persons, regardless of their attributes, to enjoy equal opportunities, rights and services that are available to the so-called mainstream group.” (18)
Whilst the above is not a quotation from the paper, I would argue what it says does reflect the essence of what is put forward by the Vision for an Inclusive Society paper. What is interesting however is that the paper itself goes on to state:
“Social inclusion is also often more easily accepted as a policy goal, as it clearly eliminates a connotation of assimilation that some associate with the term “integration” – not all individuals and/or groups in societies are eager to be ‘integrated’ into mainstream society, but all strive to be included.” (19)
The paper proceeds to quote Cezar Busatto who wrote:
“Inclusion is community. No one becomes included by receiving handouts, even if these handouts are given by public bodies and with public resources. No one becomes included by being treated by a program in which they are no more than a number or a statistic. Inclusion is connection to the network of community development, it is to become more than a speck of dust, to have a forename and surname, with one’s own distinctive features, skills and abilities, able to receive and give stimulus, to imitate and be imitated, to participate in a process of changing one’s own life and collective life.” (20)
Turning to Busatto’s own paper, I wish to bring attention to how he outlines the dominant thinking on social inclusion in the following manner:
“The concept of inclusive society refers to the notion of social inclusion, that has so far mainly been approached from two standpoints:
a) Inclusion operated by the dynamics of a market society, referring to
individual and collective ability to acquire the necessary income for appropriate insertion into the consumer market of goods and services; and
b) Inclusion promoted by public policies for inclusion, focusing on those
who are unable to be included through the dynamics of the economy (including here those excluded for reasons that are not directly economic: race, ethnicity or color, gender, nationality, language, faith, culture etc., or some physical or psychological condition requiring special needs and being generally associated with different access to goods and services.)” (21)
I would argue both approaches adhere to dominant capitalist ideology and reinforce traditional perceptions of disablement. Busatto goes on to speak about specific groups of ‘the excluded’ (sic) in this way:
“…. the destitute and poor in general, but also (in addition to children, the elderly and people with special needs) young people, the sick, women victims of violence (especially domestic violence) and social minorities suffering from some form of discrimination or prejudice due to race, color, creed, gender, learning, nationality, culture, faith, etc., indigenous peoples, the landless and people from slave settlements, alcoholics, drug dependents etc.” (22)
What I am suggesting is that even in 2007, mainstream dialogue on social inclusion portrayed older and disabled people through set paternalistic stereotypes which negate disablement as a socio-political problem. This has serious implications for campaigning for transformative change. With so many words and concepts having multiple meanings, it is vital that every effort is made to have some form of consensus in relation to how we see things.
Whether it is within A4I, Reclaiming Our Futures Alliance, or wider society, we have a responsibility to ensure we are conversant with what disabled people really want. We cannot assume there is a consensus on this because disabled people are not a homogeneous group despite having the commonality of the experience of facing disablism. Before we can exercise our responsibility, I believe it necessary to address how disabled people view their social situation. I wish to try and unpack some key aspects of understanding views on their social situation in this series of blogs.
Disabled people, oppression and the question of dialectics
Within the discussions inside A4I there is an acknowledgement that disabled people are oppressed, however, the nature of disabled people’s social oppression has not been fully explored. This situation is not uncommon because there has been a tendency among disabled people to see oppression and discrimination as being one and the same. I believe this to be a huge mistake.
Paul Abberley in 1987 stated:
“It is clear then that if the notion of oppression is to be of use in the analysis of disability in society, and most importantly of use to disabled people in understanding and transforming their own situation, we must clarify and develop what is meant by the term.” (23)
Understanding how and why disabled people are subjected to differential and unequal treatment requires us to interrogate the notion of oppression as it is applied to disabled people. We must consider the relationship between oppression and discrimination in terms of identifying the nature of disabled people’s social disadvantage. Without going through this process it is difficult to grasp their true situation or provide the tools for them to transform their own situation. Disabled people’s emancipation struggle and establishing what disabled people really want is fraught with problems because many tensions and contradictions exist.
Paul argued that:
“…. to analyse the oppression of disabled people in part involves pointing to the essential differences between their lives and those of other sections of society, including those who are, in other ways, oppressed.” (24)
This is a crucial point being made here, and though in the first instance it may be viewed as an obvious one, in truth it is complicated by the conflicts that surround how different perspectives ‘made sense of’ why these essential differences exist. As I said in the preamble, not all people who are impaired have been or are subjected to differential and unequal treatment, encountered exclusion and marginalisation and have been oppressed. It is for this reason Paul goes on to argue:
“To claim that disabled people are oppressed involves, however, arguing a number of other points. At an empirical level, it is to argue that on significant dimensions disabled people can be regarded as a group whose members are in an inferior position to other members of society because they are disabled people. It is also to argue that these disadvantages are dialectically related to an ideology or group of ideologies which justify and perpetuate this situation.
Beyond this it is to make the claim that such disadvantages and their supporting ideologies are neither natural nor inevitable. Finally it involves the identification of some beneficiary of this state of affairs.” (25)
How disabled people are ‘viewed’ relates directly to how they are treated. It centres upon what is understood by ‘disability’ and where it is located. This is why he links the encountered disadvantages and their supporting ideologies as being in a dialectical relationship. In other blogs in this series I will seek to explore disadvantages and their supporting ideologies and in the final blog consider what might constitute ‘the dialectics of disability’. By ‘disadvantages and their supporting ideologies’, I am referring to the contradictions, conflicts and tensions involved in disabled people’s struggle for emancipation. Vic Finkelstein once wrote:
“…. I believe that we cannot understand or deal with disability without dealing with the essential nature of society itself. To do this disabled people must find ways of engaging in the class struggle where the historical direction of society is fought, won or lost. It is in this arena that the boundaries of knowledge that have put disabled people aside from the ‘normal’ can and have to be openly questioned. For me repossessing the social model of disability means searching for openings in the structures of society where we might effectively contribute with others in the restructuring of society so that it is neither competitive nor disabling for all people.” (26)
This assertion, ‘we cannot understand or deal with disability without dealing with the essential nature of society itself’, is at the heart of the dialectics of disability, the emancipation struggle and the driving force behind A4I’s vision, but most crucially, it is a means by which disabled people can have engagement within the class struggle. Why speak of dialectics?
“Marx saw the dialectics in human history as a struggle between different social classes. Sure there were ideas – but these were reflections of material realities.
He took key dialectical concepts and applied them in new ways. …. Marx explained how feudalism or capitalism could initially take humanity forward but would then be constrained by their own inner contradictions.
When the social structure of a society could no longer grow the ‘productive forces’, it was time to break with that society. The ruling class as the thesis would be confronted by a highly disgruntled antithesis in the form of the exploited class. And the resulting clash would create a new synthesis – that in turn would be challenged at some point.’ (27)
I would argue both disablement and disablism are social products within this struggle.
The conflict between the individual tragedy and social models of disability are a reflection of this antagonism and as a consequence this reveals a series of contradictions which impact upon disabled people’s lived experiences.
I wish to conclude this blog by stating the belief that in order to understand the conflicts, differences and challenges within disability politics and praxis it’s necessary to address the central battleground which is how the body is viewed and treated. Paul Abberley wrote:
“The importance of the body in modern western society has been noted, for example in feminist literature and in considerations of youth culture, although any systematic sociological study has until recently been absent. For disabled people the body is the site of oppression, both in form, and in what is done with it.” (28)
This notion of ‘the body is the site of oppression’ is a core aspect of understanding disabled people’s social situation. A major difference I have with UPIAS’ articulation of why disabled people are oppressed turns on this statement:
“In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. To understand this it is necessary to grasp the distinction between the physical impairment and the social situation, called ‘disability’, of people with such impairment. Thus we define impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities.” (29)
The original social interpretation of disability focused upon people seen as physically impaired. UPIAS accepted the Amelia Harris’ definition of impairment. (30) In my opinion these two facts lay the framework for seeing the emancipation struggle of disabled people as being about tackling the restrictions which prevented people with nonconforming bodies from being active within mainstream social activities. Where I differ from UPIAS is how they view the cause of this situation – exclusion or marginalisation. They state that the negative treatment is ‘caused by a contemporary social organisation which takes no or little account of people who have physical impairments’. I argue that this is a flawed articulation because it ignores the dialectical nature of the situation. In my opinion it is precisely how the bodies of physically impaired people were taken into account which ultimately led to the contemporary social organisation of society being exclusionary. The debate around Social Care and Independent Living needs to be addressed against this backdrop as well as the consequences behind calling for integration, inclusion or transformation. This said, none of these issues can be fully addressed without confronting the nature of capitalist society.
Nicolas Carteron wrote:
“Capitalism is not designed for all of us to succeed or for the many to have equal opportunities. It is designed for a minority to hold the means of production, extracting a profit from the working masses’ labour-time. The system was never intended to make us all millionaires, but for us to accept its alienating nature, we had to believe it was.” (31)
Whilst this is undoubtedly true, the alienating nature of capitalist’s processes and values have specific issues in relation to this ‘acceptance’. It is this above all else which makes it extremely difficult to come to terms with what disabled people really want.
Notes
- Verma, R. (2018) 49% of Disabled People Feel Excluded From Society, EACH OTHER,
- Act For Inclusion – Choice. Control. Independence. Campaigning for all involved with Social Care
- A4I Vision and strategy
- Oliver, M. (1994) Capitalism, Disability and Ideology: A Materialist Critique of the Normalization Principle
https://disability-studies.leeds.ac.uk/wp-
content/uploads/sites/40/library/Oliver-cap-dis-ideol.pdf
- https://www.equalityhumanrights.com/en/advice-and-guidance/disability-discrimination
- Freire, P. (2000). Pedagogy of the Oppressed. New York: Continuum
- Coster, I. (2021) Ecosystems: The interconnectedness of all living things
https://blog.strive2thrive.earth/ecosystems-
interconnectedness-living-things/
- Where it is both safe and possible to do so, I have capitalised Social Model to refer to Mike Oliver’s original model.
- Finkelstein, V. (2007) The ‘Social Model of Disability’ and the Disability Movement. Vic Finkelstein used Disability Movement rather than the Disabled People’s Movement
https://disability-studies.leeds.ac.uk/wp-
content/uploads/sites/40/library/finkelstein-The-Social-
Model-of-Disability-and-the-Disability-Movement.pdf
- The International Classification of Functioning, Disability and
Health (ICF) is a framework for describing and organising
information on functioning and disability.
UPIAS (1975) Fundamental Principles of Disability
https://disability-studies.leeds.ac.uk/wp-
content/uploads/sites/40/library/UPIAS-fundamental-
principles.pdf
- O’Mara, J. and Richter, (2014) Global Diversity and
Inclusion Benchmarks: Standards for Organizations Around the
World
http://www.omaraassoc.com/pdf/GDIB_2014_Standard_A4_Version.pdf
- Malhotra, R. Empowering People with Disabilities
https://archive.newpol.org/issue41/Malhotra41.htm
- Callus, A-M. and Vella, S. (2021) The Independent Living
Movement and Capitalism: Challenges and Contributions
Studies in Social Wellbeing, 1: 12-25
- A Vision for an Inclusive Society, page 4.
https://www.un.org/esa/socdev/documents/compilation-
brochure.pdf
- A Vision for an Inclusive Society, page 3.
- World Summit for Social Development 1995
https://www.un.org/development/desa/dspd/world-
summit-for-social-development-1995.html
- AVIS, page 10.
18. Cruz-Saco, M. A. (2008) Promoting Social Integration:
Economic, Social and Political Dimensions with a focus
on Latin America, page 2.
19. AVIS, page 10
20. Busatto, C. (2007) Solidary Governance for Creating
Inclusive Societies A contribution to the Expert Group
Meeting on “Creating Inclusive Society: Practical
Strategies to Promote Social Integration”, Paris, page 4.
21. Busatto, C. (2007), page 2.
22. Busatto, C. (2007), page 3.
23. Abberley, P. (1987) ‘The Concept of Oppression and
the Development of a Social Theory of Disability’
Disability, Handicap and Society, Vol. 2, no.1, 160 –
178; page 162
24. Abberley, P. (1987), page 162
25. Abberley, P. (1987), page 3 and 4.
26. Finkelstein, V. (2001) THE SOCIAL MODEL OF DISABILITY
REPOSSESSED, Page 5.
27. Marxism Explained (WordPress Blog) Dialectics
28. Abberley, P. (1987), Page 173
29. THE UNION OF THE PHYSICALLY IMPAIRED AGAINST SEGREGATION and THE DISABILITY ALLIANCE discuss Fundamental Principles of Disability (1975)
30. See: Abberley, P. (1991) Three Theories of Abnormality, Occasional Papers in Sociology, No. 10, Bristol Polytechnic Department of Economics & Social Science
31. Carteron, N. (2021) The Greatest Lie We Were Sold Capitalism has shaped the Western world through lies and guilt, and it is pushing humanity towards collective suicide.
https://medium.com/curious/the-greatest-lie-we-were-sold-22aba2b863b3
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